Lived experiences of female patients aged 15-49 years undergoing treatment for multi-drug resistant tuberculosis (MDR-TB) in Lira Regional Referral Hospital, Uganda

Figures & data

Figure 1. Conceptual framework diagram for MDR-TB experiences.

Table 1. Demographic characteristics of the respondents

Socio-demographic Variables	Frequency	Percentage
Age of the participants ≤30 years >30 years	7 8	46.7% 53.3%
Occupation Employed No employed	2 13	13.3% 86.7%
Religion Catholic Protestant Pentecostal/Born-again	6 5 4	40.0% 33.3% 26.7%
Highest qualification None Primary Secondary Tertiary	4 6 3 1	26.7% 40.0% 20.0% 6.7%
Duration on MDR-TB treatment Within 6months More than 6months	6 9	40.0% 60.0%
Marital status Marred Not married	12 3	80.0% 20.0%

Table 2. Showing the codes/themes that emerged from the interviews

Themes	Sub themes	Description
Social experience	(i) Social Support	Support in terms of meeting the financial needs required in the challenging time of MDR-TB diagnosis and treatment Being supported by spousal, family members and the community during treatment
	(ii) Discrimination	Being seen as one does not belong in the group anymore
	(iii) Stigmatization	Being discriminated due to the having MDR-TB
	(iv) Persons aware about you TB status	Having community or family members who know about being diagnosed with MDR-TB Having the family members and the community knowing the diagnosis of MDR-TB
Transitions conditions	(i) Awareness about the severity of the disease	Having information one the seriousness of the condition
	(ii) Condition Burden	Effect of being diagnosed with MDR-TB
	(iii) Determination to be cured	Being focused to get better by completing the treatment
	(iv) Emotional and psychological challenges	Due to physical ill health, being dependent on others for the daily necessities, so a devastating emotional state.
	(v) Experience at the time of diagnosis	The feeling of knowing disease status, feeling of being diagnosed with MDR-TB
	(vi) Experiencing better health	The feeling of getting better
	(vii) Reason(s) for seeking treatment	What made the person seek care/treatment
	(viii) History leading to a diagnosis	Signs and symptoms make one seek care
	(ix) Hope and improvement	The feeling of better future
	(x) Knowledge about MDR-TB	Knowing some signs and symptoms of MDR-TB
	(xi) Worries	Feeling of unforeseen solution
	(xii) Reaction to diagnosis	General feeling about the news of having MDR-TB
Treatment-related experience	(i) Financial Burden	Challenges faced due to the cost incurred because of MDR-TB treatment and diagnosis
	(ii) Indirect cost	The cost incurred in the course of treatment not on drugs
	(iii) Health Referral system	Where to go to seek for further MDR-TB treatment
	(iv) Side effects	Unwanted reaction of the treatment drugs
	(v) Personal motivation	Things that push one to come for the medication everyday
	(vi) Loss of employment	Loosing job because you cannot work because of sickness.
	(vii) Treatment observation	Persons who monitor the patients while taking the medication everyday
	(viii) Understanding of MDR-TB	Participants awareness of MDR-TB treatment
	(ix) Use of reminders	Having someone who reminds the patients about taking their medication
	(x) Adherence	Following the prescribed medication by the patients
Health Facility related experience	(i) Relationship with Health workers	The way the health workers treat and handle the patients
	(ii) Perceived quality of the health services	How the patients think about the way they are treated at the MDR-TB treatment centers
	(iii) Access to health facilities	Being able to have medication and take it on a daily basis
	(iv) Health workers’ message	Receiving counseling and advice regarding MDR-TB treatment challenges

Table

Name of Interviewer: … … … … … … … … … … … … … … … … … … … … Respondent ID: … … … … … … … … … … … … … … … … … … … Date of interview: … … …/ … … …/2022 Name of the hospital: … … … … … … … … … … … … … … … … … … … … … … …

Table

	Questions	Options	Response code
	How old are you in complete years?	… … … … … … … … … … … …years
	Occupation	… … … … … … … … … … … … … … …
	What is your religion?	1= Catholic 2= Protestant 3= Muslim 4= Pentecostal/Born-again 5=Other (specify) … … …
	What is your highest qualification?	1= None 2= Primary 3= Secondary 4= Tertiary
	How long have you been on MDR-TB treatment?	… … … … … … … … … … … years